Patient Leaflets Research Articles

Preparation, validation and user-testing of pictogram-based patient information leaflets for hemodialysis patients

Background: Patient information leaflets are universally-accepted resources to educate the patients/users about their medications, disease and lifestyle modification. Objectives: The objective of the study was to prepare, validate and perform user-testing of pictogram-based patient information leaflets (P-PILs) among hemodialysis (HD) patients. Methods: The P-PILs are prepared by referring to the primary, secondary and tertiary resources. The content and pictograms of the leaflet have been validated by an expert committee consisting of three nephrologists and two academic pharmacists. The Baker Able Leaflet Design has been applied to develop the layout and design of the P-PILs. Results: Quasi-experimental pre- and post-test design without control group was conducted on 81 HD patients for user-testing of P-PILs. The mean Baker Able Leaflet Design assessment score for English version of the leaflet was 28, and 26 for Kannada version. The overall user-testing knowledge assessment mean scores were observed to have significantly improved from 44.25 to 69.62 with p value <0.001. Conclusion: The overall user opinion of content and legibility of the leaflets was good. Pictogram-based patient information leaflets can be considered an effective educational tool for HD patients.

Entwicklung von Aufklärungsmaterialien für die „Deutsche Prostatakrebsstudie PREFERE“

The German prostate cancer study PREFERE (www.prefere.de) started in January 2014. It is the first randomised controlled and preference-based trial to investigate all four options available for the treatment of organ-confined prostate cancer. According to the "Interdisciplinary evidence-based S3 guideline for the early detection, diagnosis and treatment of the different stages of prostate cancer" [1], these options include: radical prostatectomy, external radiotherapy, brachytherapy and active surveillance. In the context of PREFERE preference-based means that potential study participants who do not agree to being randomised into all four treatment arms can maximally refuse two treatment arms. This poses a big challenge to the patient education strategy employed and the information material it requires. In order to inform patients in the context of the PREFERE trial patient education materials (patient leaflet and video) had to be designed that provide patients with balanced and guideline-based information about the disease and the treatment options available, about the need for randomisation and, in particular, about the PREFERE trial and support their individual preference finding and shared decision making for participating in the trial. An iterative structured approach was used to develop the information materials on the basis of a previous literature search. Six focus groups with a total of 40 participants from three different self-help groups, affected men that do not belong to a self-help group, healthy men as well as experts, the members of the steering committee of the PREFERE trial and a focus group consisting of 18 male and female urologists were involved in the development and testing of both the patient information leaflet and the patient video. Both the patient information leaflet and the video supporting preference finding and decision making for participating in the PREFERE trial were tested for understandability and suitability by using a questionnaire and conducting a comprehensive discussion. The results of these lay evaluations have been included in the final revision. Also, a communication resource for physicians has been created comprising all the essential aspects of the PREFERE patient education materials. A short course conducted all over Germany will focus on the process of patient teaching as well as patient education materials. Whether and to what extent the decision for participating in the PREFERE trial has actually been influenced 1) by what the treating physicians communicated to the patient and 2) by the patient education materials used is one of the subjects of a quality of life survey that will be conducted following treatment or - in the case of the active surveillance option - after randomisation during the PREFERE trial.

Kurzinformationen für Patienten (KiP) als Service-Angebot für Ärztinnen und Ärzte – erste Erfahrungen mit der Implementierung

Since 2010, the German Agency for Quality in Medicine has developed so-called short information leaflets for patients that are specifically designed for use in doctor-patient encounters. Physicians, patient representatives and communication specialists were involved in the development of this format. Their implementation aims at enhancing awareness and dissemination of these leaflets amongst the members of the self-governing bodies and other multipliers (like medical specialty societies, patient organisations, other bodies and institutions of the healthcare system). This paper describes the first implementation experiences on the basis of internally collected data on the involvement of multipliers, availability and assessment of their relevance. A first analysis shows that the short information leaflets are broadly available amongst the self-governing bodies and that they are considered to be of high relevance. Due to the direct involvement of the members of specialty societies and patient organisations and other experts, short information leaflets are also gaining acceptance outside the self-governing system. This is emphasised by the rising number of requests to reprint or cite or use the leaflets. Consistency with evidence-based treatment recommendations promotes acceptance of these leaflets among physicians.

Medication overuse headache: inaccurate and overdiagnosed - a response.

Headache Currents Medication Overuse Headache: Inaccurate and Overdiagnosed – A Response Signe B. Munksgaard MD, PhD, Signe B. Munksgaard MD, PhD Danish Headache Centre, Glostrup Hospital, University of Copenhagen, Glostrup, DenmarkSearch for more papers by this authorRigmor H. Jensen MD, DrMSc, Corresponding Author Rigmor H. Jensen MD, DrMSc Danish Headache Centre, Glostrup Hospital, University of Copenhagen, Glostrup, DenmarkAll correspondence to R.H. Jensen, Area North, Building 23, Nordre Ringvej 59, 2600 Glostrup, Denmark.Search for more papers by this author Signe B. Munksgaard MD, PhD, Signe B. Munksgaard MD, PhD Danish Headache Centre, Glostrup Hospital, University of Copenhagen, Glostrup, DenmarkSearch for more papers by this authorRigmor H. Jensen MD, DrMSc, Corresponding Author Rigmor H. Jensen MD, DrMSc Danish Headache Centre, Glostrup Hospital, University of Copenhagen, Glostrup, DenmarkAll correspondence to R.H. Jensen, Area North, Building 23, Nordre Ringvej 59, 2600 Glostrup, Denmark.Search for more papers by this author First published: 29 December 2014 https://doi.org/10.1111/head.12502 Conflict of Interest: Dr. Signe B. Munksgaard has no disclosures. Prof. Rigmor H. Jensen has received honoraria for lectures and patient leaflets from MSD and Pfizer and serves on medical advisory boards for Allergan, LindeGas, ATI, and Neurocore. Read the full textAboutPDF ToolsRequest permissionExport citationAdd to favoritesTrack citation ShareShare Give accessShare full text accessShare full-text accessPlease review our Terms and Conditions of Use and check box below to share full-text version of article.I have read and accept the Wiley Online Library Terms and Conditions of UseShareable LinkUse the link below to share a full-text version of this article with your friends and colleagues. Learn more.Copy URL Share a linkShare onFacebookTwitterLinked InRedditWechat No abstract is available for this article. Volume55, Issue1January 2015Pages 206-207 This article also appears in:Medication Overuse RelatedInformation

When health means suffering: mammograms, pain and compassionate care.

The X-ray mammogram remains the cornerstone of most public health programmes aimed at the early diagnosis of breast cancer. Its virtues of safety, reliability and cheapness maintain its established position, and Western social and cultural traditions of ambivalence to pain push any questions concerning the painfulness of the procedure into the background. As part of a larger UK/USA-based empirical study, we undertook a qualitative analysis of women's accounts of pain experienced in mammograms and their reaction to it, comparing their accounts with professional views and advice to patients as reflected in interviews, patient leaflets and practice guidelines. We found considerable variability of experience and reaction to pain among patients, and indications of similar variability in professionals' views and practice, contrasting with a uniformly reassuring message in formal institutional advice. We suggest that in practice professional work-arounds and patients' felt obligation to tolerate pain bridge this gap, but that action to tackle the problems of dropout and the emotional and operational costs of the current system is nonetheless needed. The need is for concerned groups to combine to establish a serious and sustained programme of amelioration and innovative technological development to assure more compassionate patient care and operational efficiency.

Corneal calcification and phosphates: do you need to prescribe phosphate free?

Both superficial band keratopathy and deeper calcareous calcification have been linked to the presence of phosphate excipients in topical ophthalmic medicines. (1-3) The European Medicines Agency (EMA) has concluded that patients with ocular surface disease are at greatest risk. This potential side effect should be highlighted to both prescribers and patients. (4) We aimed to review the excipients of commonly prescribed ophthalmic medicines to prepare a list of phosphate-containing drugs and also to investigate where to find this information. We reviewed 78 commonly used ophthalmic drops and ointments for the information about their excipients. We reviewed the information written on drug boxes, bottles, patient leaflets, and in the electronic Medicines Compendium (EMC), which contains up-to-date details of all medicines licensed for use in the United Kingdom. The British National Formulary (BNF) was also reviewed. We found 22 phosphate-containing, 13 unbuffered, and 43 ophthalmic drugs containing buffers other than phosphate based. Most displayed the list of their excipients on their boxes and in patient leaflets. This information was also available on the EMC website but not in the BNF. Despite the EMA recommendation, none of the phosphate-containing medicines mentions corneal calcification as a potential side effect. We present a reference list of phosphate-based ophthalmic drugs to be used with caution for patients with a compromised ocular surface. We found the EMC to be a reliable and easily accessible source of information about drug components. This information will also be included in the new editions of the BNF.

Drug information at paediatric emergency department discharge: what are parents’/patients’ expectations?

ObjectivesPoor understanding of drugs prescribed at the time of paediatric emergency department (PED) discharge has been described. The aim of this study was to determine parents’ and patients’ expectations regarding...

Examining the use of an open digital health library for professionals.

BackgroundThe Norwegian Electronic Health Library (The Library) is a website for health personnel. Most of the content is also open to the public. Usage statistics have risen sharply in the years 2010-2013.ObjectiveWe wanted to find out whether the rise was caused by health personnel, the general public, or other factors.MethodsSince we lacked direct information, we had to use proxy data to shed light on our questions. We applied mixed methods (database of registered users, user survey, usage statistics, and statistics from suppliers), and triangulated between them.ResultsHealth personnel were our largest user group, but The Library was also accessed by students, patients, and other groups. Content in Norwegian was preferred to English language content. Concise, practical information was preferred to more comprehensive information. Patient leaflets were the most popular information type. Mobile phone visits differed from personal computer visits both in terms of time of day and what kind of information was viewed.ConclusionsThe Library was used mostly by health personnel, as intended, but our data are inconclusive regarding a possible change in user groups. There was a large degree of consistency in results when using different investigation methods. The survey points toward health personnel being the largest user group, and the usage statistics show that patient leaflets are the most popular content, being viewed by both health personnel and patients.

Patients’ preferences for visuals: Differences in the preferred level of detail, type of background and type of frame of icons depicting organs between literate and low-literate people

ObjectiveTo evaluate icons of organs with systematic variations in design to provide directions for the development of pictograms that support patient leaflets targeted at a low-literate audience. MethodsIn interview questionnaires, 191 pharmacy visitors (IJsselstein, The Netherlands), indicated for four organs in which image the organ was represented most clearly. The icons vary in level of detail of the depicted organ, in the organs that are shown in the background, and in how much of the body is shown as frame. Participants’ literacy was determined through the Dutch Rapid Estimate of Adult Literacy in Medicine (REALM-D). ResultsFor the three internal organs, the intestines, lungs and kidneys, low-literate participants were more likely than literate participants to opt for less context in the form of the frame of the body. ConclusionWhen the meaning of the visual is given, low-literate people prefer organ icons with less context of the body over a depiction of the whole body. Practice implicationsSince literate and low-literate people differ in perceptual preferences, continued involvement of people with limited literacy skills in the design process is essential to target the visuals to their needs.

Designing the optimal leaflet for patients

Patient leaflets can provide an invaluable tool for guiding a patient through their procedure. Studies have shown that when properly constructed, leaflets can help to reduce patient anxiety, improve the patient experience, and reduce both postoperative pain and hospitalisation. They can also aid the process of informed consent. This article aims to review current research on both the design and content of patient leaflets with particular reference to patients undergoing cataract surgery. It then goes on to propose a design for a leaflet for this patient group, using current thinking. This is presented as a copyright-free template which could be used for this patient group or adapted for other procedures.

Organizational determinants of high-quality routine diabetes care

Objective. Randomized trials showed that changes in healthcare organization improved diabetes care. This study aimed to identify which organizational determinants were associated with patient outcomes in routine diabetes care. Design. Observational study, in which multilevel regression analyses were applied to examine the impact of 12 organizational determinants on diabetes care as separate measures and as a composite score. Setting. Primary care practices in the Netherlands. Subjects. 11,751 patients with diabetes in 354 practices. Main outcome measures. Patients’ recorded glycated hemoglobin (HbA1c), systolic blood pressure, and serum cholesterol levels. Results. A higher score on the composite measure of organizational determinants was associated with better control of systolic blood pressure (p = 0.017). No effects on HbA1C or cholesterol levels were found. Exploration of specific organizational factors found significant impact of use of an electronic patient registry on HbA1c (OR = 1.80, 95% CI 1.12–2.88), availability of patient leaflets on systolic blood pressure control (OR = 2.59, 95% CI 1.06–6.35), and number of hours’ nurse education on cholesterol control (OR = 2.51, 95% CI 1.02–6.15). Conclusion. In routine primary care, it was found that favorable healthcare organization was associated with a number of intermediate outcomes in diabetes care. This finding lends support to the findings of trials on organizational changes in diabetes care. Notably, the composite measure of organizational determinants had most impact.

Information accessibility

The Royal Pharmaceutical Society (RPS) is responding to an NHS England consultation on a draft standard for health and social care information, setting out requirements and recommendations that organisations must follow. The recommendations include providing information, such as patient leaflets and letters in different formats including large print, Braille, via email, in an audio format […]

P153 Service User Group (SUG) - From inception to beyond

BackgroundTo establish a SUG giving patients, carers, staff and members of the public opportunity to engage in improving hospice services.Involvement covers a range of activities, from consulting service users about...

Astım ve KOAH tedavisinde kullanılan inhaler cihazlar hakkında hekimlerin bilgi düzeyleri ve görüşleri: INTEDA-1 Çalışması

The present paper was aimed at indicating and discussing the possible problems related to inhaler devices by considering the knowledge and practices of the physicians regarding the inhalation therapies. The present study is a prospective, cross-sectional survey carried out by Turkish Respiratory Society Inhalation Therapy Group between February 2010 and February 2011 with a participation of ten individual centres. Seven inhaler devices that were available on the market in the country were assessed. The data on the problems that 684 clinicians actively attending patients with respiratory disorders experienced in daily clinical practice or their evaluations of their patients were obtained through the questionnaire. The respondents, most of whom were pulmonologist (37.5%), and pediatrist (38.1%), had been,on average, 11.6 years in profession. The source of information on inhalers and administration techniques were reported to be mainly the internet and patient leaflets. Of the participants only 18.5% reported to have had adequate knowledge of inhaler devices and proper administration techniques. Most of the participants stated that they themselves provided the instructions of administration and that the method was often verbal explanation. The physicians believed that although approximately 60% of the patients used the drug correctly, 40.7% made critical mistakes to have adverse effects on the therapeutic outcome. The most important criteria on which the physians lay greater emphasis in choosing the inhaler devices were the physical capability, skills and age of the patients. The awareness of proper use of inhaler devices is a fundamental prerequisite for effective inhalation therapy has been improved in physicians. The results of the present study have shown that more effort is required for professional training. Assisting the physicans with medical personnel for training of the patients and educational motivation are required.

P127 Comprehensive Model For Implementation Of Guidelines For Disease Prevention

BackgroundThe National Board of Health and Welfare (NBHW) has developed guidelines for disease prevention, which include interventions to reduce smoking, hazardous use of alcohol, insufficient physical activity and unhealthy diet.ContextTo...

Visual Function and Quality of Life in Patients Who Had Undergone Eye Removal Surgery: A Patient Survey

Purpose: To measure aspects of self-reported vision-related health status and assess the impact of treatment in patients who have undergone eye removal surgery (evisceration or enucleation), using a patient administered questionnaire.Methods: In this non-randomised, questionnaire-based cohort study, patients were identified from the Artificial Eye Service referral register from 2003 to 2010. A self-administered questionnaire based upon previously published scales was completed to measure aspects of visual function and the impact of treatment.Results: Thirty-six completed questionnaires were obtained. Mean age at surgery was 54.1 years (range 13–90), with 83% male. Indication for eye-removal was trauma in 14(39%) cases. Ten (28%) had ocular co-morbidity in the fellow-eye. The main reported difficulties were with peripheral vision or distance judgements, in 64% patients. The majority of drivers (66%) had maintained the ability to drive. Self-consciousness was reported in 28(78%) patients, and 56% were able to continue work or activities with no perceived limitations. Overall comfort and aesthetic improvement were noted by the majority. Procedure-specific information leaflets for patients were appreciated.Conclusions: This survey increases our knowledge of aspects of vision-related health status following ocular pathology or trauma that requires eye removal, and may enable improved pre-operative patient counselling. Effects on peripheral vision may be noted most significantly, but the majority can continue normal activities with little difficulty. Overall improvement in comfort and appearance occurs in most patients, although feelings of self-consciousness are common.

OP0143-PARE Improving Patient Experience in Enhanced Recovery after Surgery

BackgroundEnhanced Recovery (ER) is a new approach to elective surgery with the primary focus being on improving patient outcomes. The basis is that patients are prepared to be in the...

SAT0583-HPR Differences between Service Providers and Users when Defining Feasible Optimal NHs Occupational Therapy Treatment for Patients with Thumb Base OA: Results from a Delphi Study

BackgroundThe OTTER (OsTeoarthritis Thumb ThERapy) trial is a two-year developmental study for a full randomised controlled trial (RCT) into the clinical and cost effectiveness of an occupational therapy and splint...

What do we tell patients about elective total hip replacement in the UK? An analysis of patient literature

BackgroundAlthough hip information literature is given to people following total hip replacement (THR) almost routinely, little evaluation has been conducted on it to date. Our aim was therefore to analyse and evaluate the literature provided to patients by occupational therapists concerning elective hip surgery in the UK.MethodsThis was a pragmatic, descriptive analysis of information leaflets routinely given to patients undergoing primary total hip replacement (THR). The literature was collected as part of a national survey of occupational therapy practice. In the absence of a suitable evaluation tool, the patient leaflets were compared using a checklist devised by the researchers. The three areas of interest were: accessibility including presentation of information, breadth of information covered and specific activities of daily living described.Results111 information leaflets and booklets were examined. These ranged from hospital publications which were professionally printed to those produced by individual departments. There was a variation in the readability of the leaflets ranging from 13% to 83%; the mean was 45% (SD 15). There was also variation in the content ranging from those covering surgery and possible complications, to those including diet and hip exercises. The most commonly covered activity of daily living was advice on sitting (99; 89%); the least commonly covered was work (26; 23%). Only 3 (2.7%) booklets had involved patients in their production and only 22 (20%) signposted obtaining information in another language or in Braille.ConclusionsThere was a range of literature in terms of presentation and content given to people who had a total hip replacement (THR). Although some booklets and leaflets scored highly, some did not meet basic standards such as providing contact details for help, using good quality diagrams, suggesting further reading or involving patients in their design. These results highlight important and fundamental deficiencies in the literature routinely provided.

User testing in developing patient medication information in Europe

In Europe, patient leaflets are supplied as an insert inside all medicine packs. Manufacturers must produce such leaflets according to a template and undertake consultation with target patient groups to ensure it is legible, clear and easy to use, before a licence will be granted. The consultation is usually completed through 'user testing', involving individual interviews with lay participants, with both quantitative and qualitative components. After testing, good practice is applied to address shortcomings identified, and testing repeated. The process is described using the example of a patient booklet for lithium therapy. Such testing could benefit any future US process for patient medication information.